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This post will begin a continuing series of posts that looks at rare types of dementia. Today’s post will look at the dementia of Progressive Supranuclear Palsy.

Since this blog is primarily original and unique content that provides real education and real resources and understandable information that you can actually use (you’ve no doubt noticed that, unlike many of the blogs that purport to “talk” about Alzheimer’s Disease and dementias, Going Gentle Into That Good Night does not flood your email each day with many, many blog posts that are either old news, political advocacy, or simply forwarded items from some other source, but instead does the medical and scientific research and translates that into usable and practical information for you), I will provide a clarification that I often do here.

Too many times, I hear the term “Alzheimer’s Disease” used to characterize any and all neurological damage, decline, and death.

That characterization is wrong.

Dementias refer to the full category of unique terminal neurological diseases that result in irreparable damage and destruction in the brain that lead to cognitive impairment, cognitive decline, and are always ultimately fatal.

Alzheimer’s Disease is one type of dementia. However, not everyone who suffers from dementia has Alzheimer’s Disease. And sometimes people who suffer with dementia have more than one type of dementia happening concurrently (these are called mixed dementia diagnoses).

I’ve had people who’ve never dealt directly with dementias kind of wave me off with a “whatever!” reaction when I correct them on this. And I understand that if someone hasn’t had to deal with these dementias day in and day out, they really don’t know and it doesn’t seem like a big deal.

However, for those of us who are dealing with it day and day out – or who may be in the future dealing with it day in and day out – it’s a really big deal.

Why? Precision in defining and understanding the types of dementia is absolutely critical both in caring for our loved ones, but also in effectively addressing the symptoms and behaviors associated with each dementia.

I’ll explain this in an analogy.

Let’s say you or I got diagnosed today with hypertension (high blood pressure). The normal pharmacological treatment is a medication to lower the blood pressure and possibly statins or beta channel blockers to supplement the efficacy of the main medication.

Your physician gives you the diagnosis of hypertension followed by the statement “it’s about the same thing as cancer,” and then sends you to the local hospital for radiation treatment, to be followed by chemotherapy.

Absurd, right? And yet while this may be obviously absurd to nearly everybody, a lot of those people don’t make the connection to the same absurdity of classifying all dementias as a single type of dementia.

But this underscores why it’s just as important to know about the different types of dementias and how to address and respond to the unique areas of the brain they affect as it is to know that you don’t treat hypertension with radiation and chemotherapy.

I have full-information posts on this blog about some of the more common types of dementias and symptoms/behavioral treatments:

And that’s why I want to cover some of the rarer types of dementia now. There’s no substitute for education.

We’re all, if we haven’t already been, going to be personally effected by these diseases at some point in our lives.

We can either be knowledgeable or we can spend time that we should be focusing on our loved ones playing catch-up because we didn’t take advantage of this opportunity to learn about these neurological diseases now.

Because gait and balance are primary symptoms of progressive supranuclear palsy, this neurological disease is often misdiagnosed as Parkinson’s Disease. However, progressive supranuclear palsy has unique characteristics that differentiate it from Parkinson’s Disease.

The brain stem handles many of the critical functions of the body, including eye and mouth movement, balance, breathing, consciousness, swallowing, sensitivity to external conditions (heat, cold, pain, pleasure, etc.), and hunger.

The earliest symptoms to emerge with progressive supranuclear palsy are with gait and balance, leading to unexplained falls. Frequently the falls are described by those experiencing them as sudden attacks of dizziness.

As progressive supranuclear palsy advances, the characteristics that distinguish it from Parkinson’s Disease begin to appear in vision problems.

The first two vision problems to materialize are blurry vision and difficulty controlling eye movement. It is usually when these symptoms appear that progressive supranuclear palsy can be accurately diagnosed.

People suffering with this neurological disease will, by this point in the disease process, experience severe difficulty voluntarily shifting their eyes to a downward gaze and in controlling their eyelid movements.

This lack of control over eye movement can result in exaggerated or infrequent blinking (infrequent blinking can cause serious damage to the eyes including severe dryness and ulcers on the surface of the eye) and not being able to close the eyelids or to open the eyelids.

As these symptoms appear, other symptoms also emerge. These include increasingly slurred speech and frequent difficulty in swallowing solid food and liquids (dysphagia).

There are currently no definitive treatments for progressive supranuclear palsy.

There is some research that has shown botulinum injections (Botox) can be an effective treatment for the involuntary eye movements associated with this neurological disease. However, Botox carries its own risks and the benefits of using this as a potential therapy must be weighed against those.

The normal treatment for gait and balance problems – medication and physical therapy – have, to-date, proven ineffective. Therefore, sufferers of progressive supranuclear palsy must use weighted walkers and must have human assistance when walking. Eventually, the problems become severe enough and safety becomes a high enough concern that people suffering from progressive supranuclear palsy are confined to wheelchairs.

The symptom of dysphagia is the most dangerous and the most likely to have a fatal outcome. This is because of choking and the high likelihood of aspirating food back into the lungs. Aspiration often leads to pneumonia, and in this class of neurological diseases, pneumonia is very often fatal.

The only way to address this aspect of progressive supranuclear palsy is to change to the texture of the food. The National Dysphagia Diet Levels is the standard progressive list used to determine food consistency levels as dysphagia worsens.

However, at some point, all ability to swallow anything will be lost, so even if pneumonia is avoided or successfully treated, the time will come when people suffering from progressive supranuclear palsy will not be able to take any kind of nourishment or hydration. This, then, would be the other eventual cause of death from this neurological disease.

This post will talk about how physical health – both preexisting conditions and and conditions that arise concurrently with or as a result of cognitive impairment and neurological damage – can be one of the most continuous and more serious sources of stress for both us as caregivers and for our loved ones who are suffering with Alzheimer’s Disease and dementias.

All disruptions in physical health cause stress for all of us. Even a simple cold in those of us who are physically and mentally healthy causes stress because it interrupts our lives, slows down our lives, and may negatively impact our lives.

A common example for a lot of people is that if you don’t get paid medical leave at work and you can’t be at work because you’re sick, then you don’t get paid, so you have less income that paycheck. Quite frankly, that’s why so many of us just suck it up and go to work anyway unless we’re on the precipice of dying (and that’s a bit of humor, so please take it that way!) and why the entire office ends up getting colds.

The weaker immune systems in the office may end with upper respiratory infections and even pneumonia because we couldn’t afford the stress of having less money in our paycheck. That’s the current reality in the United States in a lot of companies.

So if we realize how much stress illnesses and health problems cause in us, then we understand how the stressor of physical health problems in our loved ones suffering with dementias and Alzheimer’s Disease is exacerbated by the neurological impairment and decline.

Except for early onset dementia or early onset Alzheimer’s Disease (younger than 65 years of age when symptoms start), most of our loved ones are well on their way in the physical aging of their bodies and their bodies are wearing out.

High blood pressure is an interesting health stressor to look at because it can be a contributor to vascular dementia developing, yet high blood pressure is related to stress (it is actually the result of constricted arteries, so the heart has to pump harder to keep blood flow going), so this stressor is really a two-edged sword for our loved ones suffering with dementias and Alzheimer’s Disease. Stress causes blood pressure to rise and high blood pressure causes stress – and damage – to the heart and to the brain.

However, high blood pressure poses a third risk – and stressor – healthwise. As our loved ones age, high blood pressure becomes more difficult to manage medically, so often multiple types of medications are used, including statins, beta blockers, and diuretics, and some of these – especially long-term use of diuretics to pull fluid off the heart and extremities – have detrimental effects on kidney function and can lead to kidney failure.

Atrial fibrillation can be corrected in its early stages with some medications (with a lot of risks) and later with a pacemaker. However, when looking at a surgical option for our loved ones suffering from dementias and Alzheimer’s Disease, we must always consider that going under general anesthesia will always result in further cognitive decline and impairment. And that will be a post-surgical source of more stress for our loved ones.

Defective heart valves and blocked or constricted arteries will create stress for our loved ones in many ways. First, there is physical pain associated with these conditions and pain is a stressor. There is also a decreased flow of oxygen, so breathing will become more difficult. If you’ve ever had a hard time catching your breath (or suffered from respiratory problems like asthma), you know how stressful not being able to breathe can be.

But the decreased flow of oxygen also means less oxygen to the brain, which can make cognitive impairment even more pronounced, no matter where our loved ones suffering with dementias and Alzheimer’s Disease are in the course of their journeys, which is another source of stress.

I would strongly urge caregivers of loved ones who also suffer from heart problems to get their loved ones’ oxygen saturation levels tested. A continuous oxygen saturation level below 90 means that the body and the brain is not getting enough oxygen (you will find that these levels go extremely low during sleep).

Oxygen is available for home (or care facility) use and will help dramatically. A doctor has to prescribe it, but the saturation test results will make that easy. And a home health equipment company will deliver the equipment.

We used a non-tank oxygen concentrator for Mama at home and I had a portable version with a battery pack to take with us when we went out. I kept the portable oxygen concentrator charged all the time in case we lost power because I didn’t want oxygen tanks in our house (true confession: the oxygen tanks really made me nervous and I was terrified they were going to explode and kill us both and that was the only other no-electricity alternative).

Whether to surgically treat defective heart valves and blocked or constricted arteries is again a matter of weighing the overall risks with the overall benefits.

Although I strongly advise against general anesthesia with our loved ones with neurological damage and cognitive impairment, there are other surgical options that may be available to treat some of these conditions that do not require putting our loved ones all the way under anesthesia.

For example, my mom had congestive heart failure the last three years of her life, so we were both always on high alert for signs of it reaching an acute (full) stage and I got very good at knowing when we needed to do something, medication-wise, to get the fluid off her heart to prevent possible pneumonia and heart failure.

Five and a half months before Mama died, on a Friday afternoon in March (her birthday), Mama started sweating profusely and complaining of pain and nausea. I immediately started doing a medical inventory with her and trying to ascertain where the pain was and what, if anything, we could do at home to alleviate it.

When Mama vomited the first time, I asked if she wanted to go to the hospital, and she said she didn’t, but asked if I could help her over to the couch to lie down and sleep because she thought that might make her feel better.

Mama slept for about an hour with me hovering, wiping the beads of sweat off her forehead, wondering if I was doing the right thing by letting her decide to go the hospital or stay home. We’d already made the decision that she would not go back to the hospital for her heart problems, but instead would treat those at home under her doctor’s guidance.

I don’t know how I knew, but I knew this wasn’t a heart issue, but I didn’t know what else it could be. When Mama awoke from her nap, she groaned with pain and I managed to get a trash can over to her before she vomited again.

I put my hand over her heart and asked if that hurt there and Mama shook her head. I put my hand on her stomach and asked if it hurt there. Mama shook her head again. I knew she’d had her appendix out when she was 19 or 20, so I didn’t bother with her left lower side. I put my hand on her right side just below her ribs and she cried out and vomited again.

I told Mama we needed to go to the hospital and she agreed with me that time. After several hours in the ER, with pain and anti-nausea medication helping Mama with the physical symptoms, the tests the doctor had run showed that Mama had a gall bladder infection. We had to transfer at about 2 am that Saturday morning to a surgical hospital to deal with that.

The gastrointestinal (GI) doctor who came in around 6:30 am that Saturday morning told us that Mama needed her gallbladder removed. Without even worrying about the cognitive effects of general anesthesia, I knew Mama’s heart wasn’t strong enough to survive it.

I told the GI doctor that wasn’t an option because of her heart and I could visibly see the “whatever” look on his face when he very disdainfully told both of us that he could put a drain into to remove the infection under twilight anesthesia, and I’d have to take care of it for six weeks, but it wouldn’t remove the problem and we’d have to do it again within a year.

I knew the odds of us having to do it again before Mama died were slim to none, so Mama and I talked about it and we agreed to the drain. The procedure was scheduled for Sunday morning.

On Sunday morning, a nurse brought surgery paperwork into Mama’s room early for me to sign. I told her “no surgery” and I refused to sign the paperwork until the GI doctor changed it to the procedure for putting in the drain.

And even though we chose the least affecting method for Mama to do something that had to be done, it caused a lot of stress for Mama (both the procedure and the six weeks the drain was in) and it negatively affected her cognition dramatically for several weeks (she finally stabilized with a little improvement by the third week in April).

When we got home, I immediately revised Mama’s diet to include foods that would help her gallbladder and remove foods that might lead to another infection. I tried to keep a lot of fat out of our diets anyway, but I also knew that Mama had a limited amount of life left, so I indulged her love for ice cream every evening for dessert after dinner and when she told me one day she wanted “a hamburger at that place we used to go to,” I let her splurge on a Five Guys burger with the works and french fries.

But the stress of Mama’s physical health problems never fully went away after that. Even though she recovered beautifully from the gallbladder infection, the congestive heart failure was gaining ground and she was in pain with her heart frequently.

And that would increase her levels of stress, alternately making her worried – about me and the “burden” she thought she was to me (I always reassured her that she was not a burden to me and I wouldn’t be anywhere else doing anything else because I loved her) – and agitated about things.

My struggle – and our struggle as caregivers for our loved ones with dementias and Alzheimer’s Diseases along with other physical health problems – was not to let Mama’s stress get me stressed out.

Most of the time, I did pretty well managing my own stress in front of her.

But there were plenty of times where, even though Mama didn’t know it, my own stress levels from wanting to make sure she was comfortable and not in pain and that I was doing everything right and my own knowledge that the end was close even though I didn’t know what that would look like were extremely high and sustained.

Truth be told, I don’t really think even now, a year and a half after her death, my sustained stress levels have gone down. It’s seems as though I just traded one kind of stress for other – and, in my opinion, worse – kinds of stress.

(I often wonder if this is just the new normal for me. And how the effects, if I live long enough – although I hope I don’t because I don’t want to be a burden to anyone – will play out for me. I plead with God every day to end my life before I outlive my body and my brain.)

One other type of physical health stressors that are common to our loved ones with dementias and Alzheimer’s Disease are the cognitive impairment-related health issues. The two most common are pneumonia and urinary tract infections.

Pneumonia is many times listed as the cause of death in our loved ones with dementias and Alzheimer’s Disease. This is because as neurological damage increases, having trouble chewing and swallowing (automatic reflexes controlled by the brain) causes choking (a stress mechanism) and food gets aspirated into the lungs, causing infection.

Urinary tract infections can be very common in our loved ones as well. A lack of hydration can be one cause, while improper hygiene can be another cause. However, both can, at the same time, be causes. Urinary tract infections are treatable with antibiotics, so it’s imperative to start those as soon as symptoms appears.

One of the most common symptoms of a urinary tract infection in our loved ones with dementias and Alzheimer’s Disease is a sudden and sharp cognitive decline marked by profound confusion, extreme agitation, and sometimes physically aggressive behavior (a stress mechanism) where there was none before.

So, if we as caregivers observe this in our loved ones, we need to seek immediate medical treatment for them, either by home health nurses or by going to the ER.

This concludes this series on stressors and how they affect our loved ones with cognitive impairment and neurological damage. I hope it’s been informative.

I plan on doing another series in the future on some of the ways we – who are still healthy mentally and physically – can reduce or eliminate the potential stressors others might face if we get terminally ill (these are terminal illnesses) or we die.